About Me

My mother was murdered by what I call corporate and political homicide i.e. FOR PROFIT! she died from a rare phenotype of CJD i.e. the Heidenhain Variant of Creutzfeldt Jakob Disease i.e. sporadic, simply meaning from unknown route and source. I have simply been trying to validate her death DOD 12/14/97 with the truth. There is a route, and there is a source. There are many here in the USA. WE must make CJD and all human TSE, of all age groups 'reportable' Nationally and Internationally, with a written CJD questionnaire asking real questions pertaining to route and source of this agent. Friendly fire has the potential to play a huge role in the continued transmission of this agent via the medical, dental, and surgical arena. We must not flounder any longer. ...TSS

Wednesday, December 3, 2014

The main bell tower at the University of Texas in Austin. The 100 brains
that were missing from the Austin campus have been found at the University of
Texas in San Antonio. (Harry Cabluck / Associated Press)

By Michael Muskal contact the reporter This article is related to:
University of Texas at Austin

Like all good mysteries, the case of the 100 missing brains in Texas has
taken a new twist..

First, word had come that about half of the 200 brains kept at a university
research center had gone absent without leave. Then a professor said Wednesday
they had been located – at another school.

Now this update: The brains were destroyed more than a decade ago.

The brains had mostly come from patients at a state mental hospital and
were used for research, including the study of Alzheimer’s disease. Part of the
cache is still stored at the Animal Resources Center at the University of Texas
in Austin.

Earlier on Wednesday, a professor at the Austin school told reporters that
the brains had been sent to the University of Texas in San Antonio. Hours later,
that school denied receiving them, suggesting the brains might have gone to
another, separate facility, the University of Texas Health Science Center in San
Antonio. A spokesman there said they were investigating.

But before that investigation was completed, the mystery was solved.

“A preliminary university investigation has revealed that UT environmental
health and safety officials disposed of multiple brain specimens in
approximately 2002 in accordance with protocols concerning biological waste,”
according to a statement from the University of Texas at Austin, where the story
began.

The brains, which were received in the 1980s, were destroyed because they
were not suitable for research.

“This occurred prior to the renovation of the Animal Resources Center,
where the specimens had been stored in a secure location,” according to the
school.

“We believe the workers disposed of between 40 and 60 jars, some of which
contained multiple human brains, and worked with a biological waste contractor
to do so safely,” the school said.

The story of missing brains had been driven in part by initial reports that
one of the brains could have belonged to Charles Whitman, who climbed a tower on
the Austin campus and killed 16 people in a deadly sniper attack. Whitman, a
former Marine, was killed by police after his 1966 massacre.

Subject: University of Texas looks for clues after 100 human brains
are lost

University of Texas looks for clues after 100 human brains are lost

Posted: 7:11 p.m. Tuesday, Dec. 2, 2014

By Ralph K.M. Haurwitz and Asher Price - American-Statesman Staff

Twenty-eight years ago, the Austin State Hospital transferred about 200
brains stored in jars of formaldehyde to the University of Texas for educational
and research purposes. Now about half are missing, apparently including the
brain of Charles Whitman, who went on a murderous shooting spree from the UT
Tower in 1966.

“We think somebody may have taken the brains, but we don’t know at all for
sure,” Tim Schallert, a psychology professor, said Tuesday.

His co-curator of the collection, Lawrence Cormack, also a psychology
professor, said, “It’s entirely possible word got around among undergraduates
and people started swiping them for living rooms or Halloween pranks.”

The mystery is explored in a new book, “Malformed: Forgotten Brains of the
Texas State Mental Hospital.” Author Alex Hannaford traces the history of the
collection, such as it could be determined, and photographer Adam Voorhes
provides striking images of the 100 remaining brains.

“We are committed to treating the brain specimens with respect and are
disheartened to learn that some of them may be unaccounted for,” UT said in a
statement. “The university plans to investigate the circumstances surrounding
this collection since it came here nearly 30 years ago. The brains that are now
on campus are actively used as a teaching tool and carefully curated by
faculty.”

Under a 1986 agreement with the state hospital, UT agreed to take
“temporary possession” of the collection. The agreement called for the hospital
to remove patient-identifying data to protect confidentiality as required by
state and federal laws.

Nonetheless, it seems likely that Whitman’s brain was part of the
collection. “It would make sense it would be in this group,” Schallert said,
adding, “We can’t find that brain.”

Whitman’s rampage would eventually take 16 lives, including those of his
mother and wife, whom he stabbed to death before climbing the Tower. His note
requesting an autopsy to determine if he had a brain tumor confirmed just that,
although it’s doubtful the pecan-sized growth had anything to do with his
impulse to kill, some medical experts have said.

According to an article posted by KUT, a unit of UT, the state hospital
amassed the collection of brains through the efforts of one of its physicians,
Coleman de Chenar, presumably by harvesting them from patients at the
psychiatric hospital who died in the 1950s, ’60s and ’70s. The hospital
apparently had run out of storage space.

“I only had room for 100,” Schallert said of his psychology lab, which
eventually was assigned the collection, so half of it was transferred to the
basement of the university’s Animal Resources Center building.

“They are no longer in the basement,” Cormack said.

The 100 brains still in UT’s possession have been transferred to the Norman
Hackerman Building, where they are being scanned with high-resolution magnetic
resonance imaging equipment.

“These MRI images will be both useful teaching and research tools,” Cormack
said. “It keeps the brains intact.”

Just how useful preserved brains can be “depends a great deal on how they
were prepared, how well they have been preserved and maintained and how well the
original donors were characterized,” said Vahram Haroutunian, who directs the
Mount Sinai NIH Brain and Tissue Repository in New York. “How well were
diagnoses made, how good are the records on them, can one go back and use the
records to do more, to rediagnose using more modern standards for
diagnosis?

Social media reaction: UT missing 100 human brains The missing UT brains
were preserved in a solution of formaldehyde in water. That practice makes brain
tissue suitable for various kinds of research, but frozen brains are better for
genetic analysis, Haroutunian said.

About half of the 1,800 brains at the Mount Sinai brain bank are preserved
in formalin, Haroutunian said. The other half are frozen.

The 1986 agreement said UT would receive autopsy reports relating to the
collection.

“It would be tremendously helpful, but I don’t believe we have them,”
Cormack said. “When Tim (Schallert) got involved, all that existed were the
brains. There were no associated records” other than brief notations such as
‘Parkinson’s disease’ or ‘Alzheimer’s.’ There is no psychiatric information, and
that is a tragedy. Whoever first got the autopsy reports may have put them
somewhere and not told anyone. At this point that’s just a mystery.”

Questions about the collection began to emerge in 2011, when Voorhes, on
assignment for Scientific American magazine, visited UT to photograph brains.
Schallert showed him a glass cabinet filled with brains, in a closet shared with
chemistry materials. Some of the brains were from people with Down syndrome or
meningitis.

“It shocked me,” Voorhes said, that the brains had come through the mental
hospital, given that some of those diseases are not treated as mental illness
today. “I was shaken.”

He said he felt they were “very rare, very special and should be
documented.” He contacted Hannaford, a friend, and they collaborated on the
book.

As for Whitman’s brain, Cormack isn’t convinced it was ever in the
collection. “Frankly,” he said, “to me it smells of urban legend.”

WASHINGTON - The research and handling of human tissue samples at the
National Institutes of Health (NIH) appears to be largely ungoverned and there
is almost no accountability for damaged or lost samples, according to leaders of
the House Energy and Commerce Committee.

In a letter to NIH Director Elias Zerhouni, M.D., lawmakers said they were
"extremely concerned" by "a fairly loose, ad-hoc approach" to the samples, which
could hold significant potential for research to combat any number of illnesses
or disease. The members of Congress are seeking extensive information detailing
the scope of the samples and an estimate of those lost each year at NIH
labs.

Committee Chairman Joe Barton, R-Texas, has said he will introduce
legislation to reauthorize the NIH and hopes for House passage this year. The
last reauthorization of NIH occurred in 1993.

The full text of the letter, signed by Chairman Barton, ranking member John
Dingell, D-Mich., Oversight and Investigations Subcommittee Chairman Ed
Whitfield, R-Ky., and subcommittee ranking member Bart Stupak, D-Mich.,
follows:

June 20, 2005

Dear Dr. Zerhouni:

The Committee on Energy and Commerce is investigating the adequacy of the
National Institutes of Health (NIH) policies for maintaining research samples of
human tissue.

Our interest in the NIH's maintaining of human tissue samples arises from
concerns raised by a scientist at NIH ("NIH scientist"). She contacted the
Committee staff about the problems she encountered in locating spinal fluid
samples she and her colleagues had collected from over 30 patients with
Alzheimer's disease.

The NIH scientist had previously worked at the National Institute of Mental
Health (NIMH) with the Geriatric Psychiatry Group. She left the NIMH in 1997,
and returned to NIH at another institute/center in August 2001. Prior to leaving
the NIMH in 1997, she was the principal investigator on drug studies in which
she and other colleagues collected spinal fluid from over 30 Alzheimer's
patients. Approximately 20 ccs of spinal fluid were collected with each spinal
tap. The NIH scientist left the NIMH before conducting these studies and did not
use the spinal fluid samples. According to the NIH scientist, these spinal fluid
samples were stored in appropriately backed-up freezers when she left NIMH in
1997.

Sometime in mid-2004, the NIH scientist, now at another NIH
institute/center, asked her former supervisor at NIMH for these patient samples
for a study she wanted to conduct. After several months, the former supervisor
in January 2005 reported to the NIH scientist that his group would be able to
produce 10 subjects total (before and after taps) with only 0.5 cc available for
most of the subjects. The former supervisor and the NIMH have been unable to
account for what happened to the rest of the spinal fluid samples.

The Committee staff has learned from NIH officials that the NIH has no
uniform, centralized, and mandatory authority regulating the handling of human
tissue samples. Some NIH laboratories keep a written record on the maintenance
of these samples, but other NIH laboratories do not. Although there are explicit
regulations defined in 42 C.F.R. 72.6 detailing the handling for hazardous
biological materials and select agents, there is no explicit policy for the
handling and accounting of human tissue samples. In addition, there is no formal
inventory control or tracking system at NIH. If a freezer or other storage
facility malfunctions and the human tissue samples become unusable, NIH
laboratories are not required to account for the disposition of these samples.
There is reason to believe that there are cases where NIH loses human tissue
samples but has no record of what has been lost. Moreover, the lack of
accountability leaves NIH wholly vulnerable to theft and diversion of valuable
human tissue samples.

We are extremely concerned over what was described to Committee staff by
NIH officials of a fairly loose, ad-hoc approach to controlling human tissue
samples. These samples were collected under informed consent from human subjects
who agreed to provide their tissue because they were told that the sample would
be used for a particular purpose in the study, perhaps even used to look at the
effects from a particular drug. Some of these samples are extraordinarily
precious from a research standpoint because some patients who donated samples
had a rare disease. For example, we note that the National Institute of Allergy
and Infectious Diseases obtained blood samples from SARS patients as part of its
immunological research of SARS and coronaviruses. In addition, NIH intramural
researchers sometimes rely on obtaining human tissue samples from sources
outside NIH for their laboratory work, or even in their work for Cooperative
Research and Development Agreements with third parties.

NIH has an obligation to the human subjects and the outside scientific
community to require an appropriate tracking system or protocol for all
laboratories involved with collection and maintenance of human tissue samples.
NIH officials acknowledged to Committee staff the importance of maintaining
human research samples because for all published work, scientists are expected
to provide access to other researchers to the human tissue samples for the
purpose of reproducing the results reached in the scientist's reported
study.

In light of the concerns about the current handling by NIH of human tissue
samples, pursuant to Rules X and XI of the U.S. House of Representatives, please
provide the following by no later than Tuesday, July 5, 2005:

1. The current total number of human tissue samples maintained at NIH, with
a breakdown for each Institute or Center. The current total number of
laboratories at NIH that maintain human tissue samples and the current total
number of laboratories that have a tracking system accounting in place for the
human tissue samples.

2. All records dated on or since January 1, 2002, in possession of NIH,
including communications within each Institute/Center and each laboratory,
relating to any distinct direction, instruction, or policy relating to the
handling of human tissue samples.

3. All records dated on or since January 1, 2002, in possession of the NIH
Office of Intramural Research or the NIH Office of Management Assessment
relating to any closed investigation of an allegation relating to the handling
or accounting of human tissue samples. Please also state whether there are any
open investigations and, if so, which institutes or centers are under
investigation.

4. The current total amount of expenditures for FY2005 by NIH for
maintaining and repairing freezers or other storage facilities containing human
tissue samples.

5. An estimate of the total number of human tissue samples lost each year
at NIH laboratories, and an estimate of the number of human tissue samples lost
each year at NIH laboratories because of freezer or storage facility
malfunctions.

6. A description of any measures NIH is taking to reduce the number of
research freezer or other storage facility malfunctions or breakdowns.

7. List the names of the ten rarest diseases for which NIH has human tissue
samples, the name of the Institute and laboratory that has possession of these
samples, and the specific measures currently being taken to track these
samples.

8. All records relating to the CSF samples collected by the NIH scientist
and others in a NIMH study on lithium in early Alzheimer's disease patients.
Patient identifiers may be redacted.

Additionally, please provide the following:

9. Since January 1, 1995, has any official at NIH authorized the use of
human tissue samples in possession of NIH to be used by any NIH employee in
support of an outside activity?

10. Since January 1, 1995, has any official at NIH ever used human tissue
samples that were in possession of NIH in connection with any of his or her
outside activities?

Please note that, for the purpose of responding to these requests, the
terms "records" and "relating" should be interpreted in accordance with the
attachment to this letter. In addition, we are requesting that following
production of the records to the Committee, you make available NIH employees for
Committee staff interviews as requested by Committee staff.

>>>The research and handling of human tissue samples at the
National Institutes of Health (NIH) appears to be largely ungoverned and there
is almost no accountability for damaged or lost samples, according to leaders of
the House Energy and Commerce Committee.<<<

SO, the loved ones to CJD human TSE deaths that went to the pain of
submitting these samples for answers and science, are now to wonder if they even
used them at all, and if they were just thrown out like some old used garbage.
IF we would have known that, we would have rathered burried them with the
deceased, in tact. This is all very disgusting and very disturbing...TSS

>>>7. List the names of the ten rarest diseases for which NIH has
human tissue samples, the name of the Institute and laboratory that has
possession of these samples, and the specific measures currently being taken to
track these samples.<<<

RATHER interesting, but it would seem that human prion disease should be at
the top of the list...

WASHINGTON, March 24 (UPI) -- The National Institutes of Health may discard
part or all of a rare collection that includes hundreds of human brain samples
from patients that suffered from a disorder similar to mad cow disease -- unless
another researcher or institution takes them on, United Press International has
learned. Several scientists said the collection, which is held by the NIH's
National Institute for Neurological Disorders and Stroke in Bethesda, Md. -- and
includes brains and other tissue samples from people afflicted with the
brain-wasting illness Creutzfeldt Jakob disease -- is irreplaceable and could
even provide insight into treatments for the fatal disorder. Currently, there is
no cure for CJD and patients typically die within a year after symptoms begin.

However, NIH officials in control of the collection's fate told UPI the
remaining samples are of little scientific value and may be disposed of if
researchers outside the agency do not claim it. That position stands in sharp
contrast with CJD experts who thought the collection should be preserved.

"It's invaluable," said Dr. Paul Brown, former medical director of the
NIH's Laboratory for Central Nervous System Studies, whose expertise is in CJD
and mad cow disease (also known as bovine spongiform encephalopathy, or BSE).

The collection is badly in need of organization and no one is certain how
many brains or other tissue samples it contains, said Brown, who worked with the
collection since its inception in the 1960's until his retirement last year.
There could be brains, blood, spinal fluid and various other tissues from 1,000
people or more, he said. Some of the specimens would be of scientific use today,
he said.

"This collection has the unique value of stretching back to the beginning
of when these diseases were discovered," Brown told UPI, noting that the first
samples were obtained in 1963. "It would be as though you had in your hands the
possibility of finding out when AIDS started."

Bruce Johnson, a former technician at the CNSS lab who worked extensively
with the collection before he retired in 2003, told UPI he was told "in two
years they (NIH officials)are going to destroy it, if nobody wants it."

Eugene Major, acting director of the basic neuroscience program at the NIH,
said no specific timeframe had been established.

"We have not set a firm deadline date," Major told UPI. "We are working
very hard with investigators that we know in order to be able to make sure that
whatever we deem is valuable is potentially kept here." Some samples already
have been determined not to have any research value and have been "removed and
disposed of," he said.

Others samples have been given out to Dr. David Asher at the Food and Drug
Administration and Pierluigi Gambetti at the National Prion Disease Pathology
Surveillance Center in Cleveland, Ohio.

Major maintained the remaining collection was not particularly valuable for
research. "Whatever had been collected here that has not already been
distributed to responsible investigators who could use them really has very
little remaining value," he said.

Neither Asher nor Gambetti returned phone calls from UPI, but Brown said he
thought Asher had received only a dozen or two samples at most and Gambetti had
not received much at all.

Neil Cashman, a brain-disease researcher at the University of Toronto's
Center for Research in Neurodegenerative Diseases -- who has tried to obtain the
collection from the NIH -- said it was priceless.

"It would be like destroying an art museum," Cashman told UPI. "There's all
this information and insight that's locked up in these tissues and if it's
destroyed it will be lost forever."

The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit
organization consisting of more than 40 university and institute researchers
from the United States, Canada, United Kingdom and France, also thinks the brain
collection is invaluable.

"It is the opinion of the Board of Directors ... of The MIND Inc., that the
... brain bank should not be broken up nor destroyed," said Harry E. Peery,
MIND's executive director, in a letter to UPI. "We believe that this collection
is of inestimable research value and should be kept intact."

The institute, at the University of Saskatchewan in Saskatoon, applied for
possession of the collection in early 2004, but received a letter from the NINDS
indicating the fate of the collection had not yet been determined.

"We have heard nothing further since that time" and continue to be
interested in acquiring the complete collection, Peery said.

CJD belongs to a group of rare, brain-wasting disorders that are little
understood, incurable and fatal. This includes mad cow disease in cows, chronic
wasting disease in deer and elk. The most infamous of these illnesses in humans
is variant CJD, which people can contract from eating beef products infected
with the mad-cow pathogen.

Although vCJD has infected more than 154 people worldwide, only one case
has ever been detected in the United States -- in a Florida woman who is thought
to have contracted the disease while living in the United Kingdom. However, the
NIH brain samples have never been screened for vCJD -- something Johnson thinks
is critically important.

"No one has ever looked to see if any American (in the collection) in the
past had variant CJD," Johnson said. "You think it would be required that they
do that. You think it would be a Congressional mandate that they test these
brains: 'Let's see if we've got this disease in our country.'"

Johnson noted at least one brain in the collection he personally had
examined -- from a French woman collected in 1971 -- showed evidence of possible
vCJD infection, but the sample needed further study to be sure.

Other samples in the collection include the brains of patients who were
only 16 years old when they were diagnosed with CJD. This would be unusual for
sporadic CJD, because generally it strikes those over age 60. Variant CJD, on
the other hand, typically occurs in patients in their 20s or younger.

"I thought it was absolutely vital (to test these brains)," Johnson said.
"Maybe there's a dozen cases in there of variant CJD."

Major disagreed. "There's really no reason to do that," he said. "The
effort it would take to screen those samples ... would not give us any new
insights into variant CJD beyond what it is we already know."

Johnson said he was frustrated with the NIH administration's lack of
interest in preserving the collection or testing for vCJD. "They don't
understand," he said, "they honest-to-god don't understand what it's all about."

Patient advocates also objected to the possible destruction of the brains.

Terry Singeltary, whose mother died of a type of CJD called Heidenhain
variant in 1997, said he is outraged and families of other CJD victims probably
will be, too.

"A lot of these families went through a lot of heartache and a lot of
trouble to get these brain samples to the NIH," Singeltary told UPI. "Now
they're just going to discard them because they're not of scientific use? That's
just asinine. That stuff is valuable information."

Graham Steel, vice-chair of the Human BSE Foundation in the United Kingdom,
told UPI, "The potential loss of such important tissue samples would be a
massive blow for TSE (the group of diseases that includes CJD and BSE) research
in the United States. This should not be allowed to happen."

Singeltary noted there currently is no cure for these diseases. "If you
don't have any answers yet, why would you throw these specimens away?" he asked.

He added that more sensitive tests are just becoming available and could
help determine the origin of some of the CJD cases. "We've all been sitting
around waiting for more sensitive tests to get validated because we want
answers," he said.

"You know, it must be an embarrassment," Johnson said. "Some Senator is
going to eventually say 'What is NIH doing about mad cow disease?' And people
are going to scratch their heads and say 'not much'." He added, "What's going to
happen (is) one of these senators or their wife is going to develop spontaneous
CJD one day and ... there's going to be hell raised and they're going to ask,
'Why isn't NIH working on this?'"

WASHINGTON, April 1 (UPI) -- Scientists, consumer groups and
patient-advocates have embarked upon efforts -- including petitioning members of
Congress and seeking storage space at a Canadian university -- to prevent the
National Institutes of Health from destroying an irreplaceable collection of
human brains from patients afflicted with a condition similar to mad cow
disease. As United Press International reported last week, the NIH has begun
shopping for a new home for its collection of brains, spinal fluid and other
tissues from hundreds of patients around the world who died from Creutzfeldt
Jakob disease -- an incurable, fatal, brain-wasting illness. The collection
dates back to 1963 and the consensus among scientists in this field is it is
invaluable for research and could provide insights that might aid in developing
diagnostic tests, treatments or cures for CJD.

NIH officials, however, maintain the remaining samples in the collection --
stored in some 30 freezers by the National Institute for Neurological Disorders
and Stroke in Bethesda, Md. -- are of little value and may be disposed of if
researchers or institutions do not come forward to claim them.

Families of patients who died of CJD have reacted with outrage, concerned
that the effort mounted to collect the brains in the first place has been all
for naught. Several have contacted their respective members of Congress and
urged them to step in.

"The brains and brain tissue were sent to NIH in good faith for future
research and destroying them is an outrage," Terry Singeltary, a patient
advocate in Bacliff, Texas, wrote in a letter to Sen. Kay Bailey Hutchinson,
R-Texas, and several other members of the state's congressional delegation.
Singeltary's mother died of a type of CJD called Heidenhain variant in 1997.

Hutchinson's office did not return a call from UPI.

Eugene Major, who serves as acting director of the NINDS and is responsible
for the fate of the brain collection, did not return a call from UPI.

"The patients these brains were taken from suffered greatly before they
died of CJD," Heather Larson of Phoenix, whose mother succumbed to CJD last year
at the age of 56, wrote in a letter to Arizona Republican Sens. John McCain and
Jon Kyl, and Republican Rep. John Shadegg. "Their brains hold answers that can
save human lives. Destroying the brains at Bethesda would greatly hinder the
research being done to fight this disease and would cost many their lives."

The offices of McCain and Kyl did not return UPI's calls.

"The ravages of this disease, and the toll it takes not only on its victims
but on family and loved ones, cannot easily be described to someone who has not
witnessed it personally," Patty Cook of Kansas City, Kan., wrote in a letter to
Kansas Republican Sens. Sam Brownback and Pat Roberts, and Democratic Rep.
Dennis Moore.

"I urge you to do whatever you can to ensure these brains are not
destroyed," added Cook, whose mother died of CJD in 1982.

Brownback's office did not return a call from UPI.

CJD belongs to a group of diseases -- called transmissible spongiform
encephalopathies or TSEs -- that includes mad cow disease, chronic wasting
disease in deer and elk, scrapie in sheep and several types of CJD in humans.
There is no cure for CJD and it typically results in death within a year after
the onset of symptoms.

Consumer groups also are concerned and are considering taking steps to
ensure the brain collection will be preserved.

"This is outrageous," Michael Hansen, a biologist and senior research
associate with Consumers Union in Yonkers, N.Y., told UPI. "Those brains are a
critical resource for CJD science and they must be at a research facility."

Hansen added that his late friend, Joe Gibbs, the former chief of NINDS's
Laboratory of Central Nervous System Studies, told him the brain of famed
choreographer George Balanchine, who died of CJD in 1983, resides in the
collection.

"How can we claim to be a scientific country if we're going to be throwing
away an irreplaceable repository of the first evidence of these diseases?" asked
Felicia Nestor, who serves as a consultant to Public Citizen.

There may be hope yet for the collection, however.

Neil Cashman, an expert on TSEs at the University of Toronto's Center for
Research in Neurodegenerative Diseases, told UPI he has been attempting to drum
up support for acquiring the collection with his colleagues at the University of
British Columbia in Vancouver -- where he plans to move this summer.

"I'm trying to organize support for an official letter from UBC to NIH to
request the collection," Cashman said.

The letter will probably go out in about a month, he said.

"The goal would be to make it a resource for the world and make the tissues
available to scientists who had a reasonable request," he added.

Singeltary said he has heard from at least one other prominent scientist in
this field who said they planned to contact the NIH and urge it to reconsider
the fate of the collection.

One brain in the collection, that of a French woman who died in 1971, may
help provide clues about the origins of variant CJD -- a condition similar to
CJD that humans can contract from eating beef products contaminated with the
mad-cow pathogen. The first recognized case of vCJD occurred in 1995 in the
United Kingdom, but an NIH scientist said he tested the French woman's brain in
2000 and found signs consistent with vCJD -- not CJD.

French researchers currently are re-examining specimens from the case to
determine if the woman was indeed infected with vCJD. If she was, it would
suggest the disease began infecting people more than 20 years earlier than
previously thought.

Cashman said the case underscores the value of the NIH brain collection.

"There is information locked up in these freezers that will be lost forever
if this collection is destroyed," he said.

WASHINGTON, April 7 (UPI) -- A National Institutes of Health official who
told United Press International the agency might destroy its collection of
brains from human patients afflicted with a condition similar to mad cow disease
reportedly has told the head of a patient-advocate group the collection would be
preserved. The official, Eugene Major, acting director of the basic neuroscience
program at the NIH, has not responded to e-mail or a phone call from UPI seeking
clarification of his remarks, and the official status of the collection remains
unknown.

As reported by UPI on March 24, the collection is stored in freezers by the
NIH's National Institute for Neurological Disorders and Stroke in Bethesda, Md.
It contains brains and other tissue samples from hundreds of people who died
from the brain-wasting illness Creutzfeldt Jakob disease, as well as tissues
from an untold number of experimental animals.

The consensus of scientists in this field is the collection, which dates
back to 1963, is invaluable for research and could even provide insight into
treatments for the fatal disorder. Currently, there is no cure for CJD and
patients typically die within a year after symptoms begin.

Florence Kranitz, president of the non-profit advocacy group CJD
Foundation, told UPI she had "a very long conversation" with Major, in which he
told her the remaining tissues in the collection would not be destroyed.

"He reassured me in no uncertain terms," Kranitz said, noting constituents
of the foundation and other CJD advocacy groups had been expressing concerns to
her the tissues would be destroyed.

Kranitz, who has personal reasons for wanting the collection preserved --
her husband died of CJD in 2000 -- said she plans to meet with Major at the end
of April to discuss the issue further.

CJD belongs to a group of diseases collectively known as transmissible
spongiform encephalopathies, or TSEs, that includes mad cow disease in cows,
chronic wasting disease in deer and elk, and scrapie in sheep. All TSEs are
incurable and fatal.

Major previously told UPI some samples already have been destroyed and
others have been given to researchers at the Food and Drug Administration and
the National Prion Disease Pathology Surveillance Center in Cleveland.

Major said the remaining collection "has very little remaining value" and
could be destroyed if another entity does not claim them.

Bruce Johnson, a former NIH scientist who retired at the end of 2003, said
he had been told the collection would be destroyed in two years if no one took
the samples from the NIH.

In response to hearing that Major had failed to confirm to UPI the brain
collection would not be destroyed, Patricia Ewanitz, who lives in Port Jefferson
Station, N.Y., and is founder of the advocacy group CJD Voice, said, "The brain
tissue might not be indispensable to the National Institutes of Health but it is
absolutely necessary to the families who thought enough of science to donate the
brains, brain tissue and blood in hopes of someday finding an answer to why
their loved one died."

Ewanitz, whose husband died of CJD in 1997, added, "It now seems like such
a joke."

Terry Singeltary, whose mother passed away from a type of CJD in 1997, said
the NIH should use the samples for scientific research, not just store them in
freezers.

Both Singeltary and Ewanitz said they would feel more reassured if Major
verified in writing the collection will not be destroyed.

"I would go further and ask Major what he plans to do with them,"
Singeltary said. "If the samples are just going to sit up there and go bad, then
they should give them out to researchers looking for cause and cure."

The revelation the NIH might destroy part or all of the collection sparked
an outcry from patient advocates, consumer groups and scientists.

Advocates have been contacting their members of Congress, urging them to
investigate and prevent the NIH from destroying the brains. Consumer groups also
have gotten involved and scientists have taken steps to obtain the collection or
have urged Major not to destroy the samples.

Felicia Nestor, who serves as a consultant to Public Citizen, told UPI she
had contacted certain legislators and at least one was considering looking into
the situation. Nestor asked the legislator's name be withheld.

Kranitz said Major also told her he plans "to advertise in professional
neurological journals and by whatever means necessary to make it known" to
researchers in the field the tissues are available.

Major previously said, however, that efforts to inform researchers of the
availability of the collection were already underway and included informing NIH
grantees. He added he had personally notified researchers at scientific
meetings, but no TSE researcher contacted by UPI was aware of this.

"I was never informed," said Laura Manuelidis, an expert on these diseases
and section chief of surgery in the neuropathology department at Yale
University. She said the first she had heard of the situation was in UPI's March
24 report.

Manuelidis also said she contacted Major, expressing interest in the
specimens, but so far has not received a response.

"I sent a letter to (Major) on (March 25) about our interest in these
specimens, but he has not replied," she told UPI in an e-mail.

Neil Cashman, a TSE expert at the University of Toronto, who said he was
not aware the samples might be destroyed, has lobbied colleagues at the
University of British Columbia -- where Cashman is scheduled to move to this
summer -- to help draft a letter requesting the collection.

The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit
organization consisting of more than 40 university and institute researchers
from the United States, Canada, the United Kingdom and France, requested the
collection in January, 2004. So far, the institute has not been informed of a
decision by the NIH.

Asked if Major had told him whether the collection would be preserved, MIND
Executive Director Harry Peery said, "We have heard nothing further from Eugene
Major or anyone else at the NIH regarding the brain collection."

WASHINGTON, May 31 (UPI) -- The National Institutes of Health apparently
has reversed its position on the fate of an invaluable collection of brains from
people afflicted with a condition similar to mad cow disease, saying in a letter
to a U.S. senator it will not destroy the collection.

An NIH official had told United Press International previously that the
brain collection, which consists of samples from hundreds of people who died
from the brain-wasting illness called Creutzfeldt Jakob disease, could be
discarded if another entity does not claim them.

That sparked an outcry from patient-advocacy groups, consumer watchdogs and
scientists, and the agency now appears to have backed away from that course.

"All the brains and other tissues with potential to help scientists learn
about CJD are, and will continue to be, conserved," Story Landis, director of
the National Institute of Neurological Disorders and Stroke, which oversees the
brain collection, wrote in a May 10 letter to Sen. John Cornyn, R-Texas.

Cornyn had inquired about the status of the collection in April.

Last March, Eugene Major, acting director of the basic neuroscience program
at the NIH, told UPI the useful portions of the collection had been doled out to
scientists and the remaining samples had "very little remaining value" and could
be destroyed.

Landis could not be reached for comment Tuesday. NINDS spokesman Paul
Girolami told UPI he had been unable to locate her.

Scientists think the collection, which dates back to 1963, is invaluable
for research on CJD and similar diseases and could even provide insight into
treatments. There is no cure for CJD and patients typically die within a year
after symptoms begin.

"Absolutely, the collection is worth keeping," Bruce Johnson, a former NIH
scientist who said he had been told the collection would be destroyed in two
years if no one took the samples from the agency, told UPI.

The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit
organization consisting of more than 40 researchers from several countries,
offered to take the collection off of NIH's hands more than a year ago and so
far has not heard anything from the agency, Harry Peery, MIND's executive
director, told UPI.

CJD belongs to a group of incurable and fatal diseases collectively known
as transmissible spongiform encephalopathies, or TSEs, that includes mad cow
disease in cows, chronic wasting disease in deer and elk, and scrapie in sheep.

Variant CJD, or vCJD, is a relatively new TSE, which people can contract
from consuming beef products infected with the mad cow pathogen.

Despite Landis' assurance the collection will be preserved, some family
members of the patients who donated their brains to the NIH are still skeptical.
This is because the wording Landis used in the letter leaves open the
possibility that some brain samples are being destroyed.

"The tissues that are discarded are those that have either decayed to an
extent that renders them no longer appropriate for research or those for which
we do not have sufficient identification," Landis wrote.

"Which ones" are being destroyed? asked Terry Singeltary, who is involved
with several CJD patient groups.

"With a system like this, they could destroy whatever and whenever they
wanted, for whatever reason they wanted," Singeltary, whose mother died of CJD
in 1997, told UPI.

"It's a perfect excuse to discard some suspicious tissue resembling vCJD or
some atypical TSE related to animal TSEs in the USA," he added.

Although the collection includes samples from CJD patients as young as 16
that could make them candidates for possible vCJD, the brains have never been
screened for evidence of the disease. The only confirmed vCJD case in the United
States occurred in a Florida woman who is thought to have contracted the disease
in England.

Johnson said he along with renowned CJD expert Paul Brown were in the
process of sorting through the samples to match them up with patient
identification documents until they both retired. Some of the samples may prove
impossible to identify, he said, but he and Brown are the only ones familiar
enough with the collection to organize it and neither has been asked back by the
agency to aid in the identification process.

In response to your recent request for my assistance, I have contacted the
National Institutes of Health.

I will write you again as soon as I receive a reply. I appreciate having
the opportunity to represent you in the United States Senate and to be of
service in this matter.

Sincerely,

JOHN CORNYN United States Senator JC:djl

===============

JOHN CORNYN TEXAS UNITED STATES SENATE WASHINGTON, DC 20510-4305

May 18, 2005

Mr. Terry Singeltary

P.O. Box 42

Bacliff, Texas 77518

Dear Mr. Singeltary:

Enclosed is the reply I received from the Department of Health and Human
Services in response to my earlier inquiry on your behalf. I hope this will be
useful to you. I appreciate having the opportunity to represent you in the
United States Senate. Thank you for taking time to contact me.

Sincerely,

JOHN CORNYN United States Senate JC:djl Enclosure

DEPARTMENT OF HEALTH & HUMAN SERVICES

National Institutes of Health National Institute of Neurological Disorders
and Stroke

Your letter to the National Institutes of Health (NIH) forwarding
correspondence from Mr. Terry S. Singeltary, Sr., has been forwarded to me for
reply. Mr. Singeltary is concerned about the preservation of Creutzfeldt-Jakob
disease (CJD) brain samples that have been maintained by the National Institute
of Neurological Disorders and Stroke (NINDS) Intramural Research program for
many years. I am sorry to learn that Mr. Singeltary's mother died of CJD and can
certainly understand his desire that any tissues that could help investigators
unravel the puzzle of this deadly disease are preserved. I hope he will be
pleased to learn that all the brains and other tissues with potential to help
scientists learn about CJD are, and will continue to be, conserved. (The tissues
that are discarded are those that have either decayed to an extent that renders
them no longer appropriate for research or those for which we do not have
sufficient identification.) The purpose of gathering these brains and tissues is
to help scientists learn about CJD. To that end, some of the NINDS-held samples
are distributed to investigators who can demonstrate that they have a compelling
research or public health need for such materials. For example, samples have
been transferred to NIH grantee Dr. Pierluigi Gambetti, who heads the National
Prion Diseases Pathology Surveillance Center at Case Western Reserve University
in Ohio and works with the Centers for Disease Control and Prevention to monitor
all cases of CJD in the United States. Dr. Gambetti studies the tissues to learn
about the formation, physical and chemical properties, and pathogenic mechanisms
of prion proteins, which are believed to be involved in the cause of CJD.
Samples have also been transferred to Dr. David Asher, at the U.S. Food and Drug
Administration, for use in assessing a potential diagnostic test for CJD.

Page 2 - The Honorable John Cornyn

in closing, we know that donating organs and tissue from loved ones is a
very difficult and personal choice that must often be made at the most stressful
of times. We at the NINDS are grateful to those stalwart family members who make
this choice in the selfless hope that it will help others afflicted with CJD. We
also know the invaluable contribution such donations make to the advancement of
medical science, and we are dedicated to the preservation of all of the tissue
samples that can help in our efforts to overcome CJD.

I hope this information is helpful to you in responding to Mr. Singeltary.
Sincerely,

Story C. Landis, Ph.D. Director, National Institute of Neurological
Disorders and Stroke

*** Confirmed Variant Creutzfeldt-Jakob Disease (variant CJD) Case in Texas
in June 2014 confirmed as USA case NOT European ***

Sunday, November 23, 2014

*** Confirmed Variant Creutzfeldt-Jakob Disease (variant CJD) Case in Texas
in June 2014 confirmed as USA case NOT European ***

The completed investigation did not support the patient's having had
extended travel to European countries, including the United Kingdom, or travel
to Saudi Arabia. The specific overseas country where this patient’s infection
occurred is less clear largely because the investigation did not definitely link
him to a country where other known vCJD cases likely had been infected.

We report a case of a 33-year-old female who died of a prion disease for
whom the diagnosis of sFI or FFI was not considered clinically. Following death
of this patient, an interview with a close family member indicated the patient's
illness included a major change in her sleep pattern, corroborating the reported
autopsy diagnosis of sFI.

CJD TEXAS 38 YEAR OLD FEMALE WORKED SLAUGHTERING CATTLE EXPOSED TO BRAIN
AND SPINAL CORD MATTER

URGENT, PLEASE NOTE ;

>>> Up until about 6 years ago, the pt worked at Tyson foods where
she worked on the assembly line, slaughtering cattle and preparing them for
packaging. She was exposed to brain and spinal cord matter when she would
euthanize the cattle. <<<

J.A. Rawlings,*1 K.A. Hendricks1, O.M. Nuno1, D.A. Brown1, D.A. Evans2,
Texas Department of Health, 1Austin and 2Tyler, Texas Creutzfeldt-Jacob Disease
(CJD), a transmissible spongiform encephalopathy, is caused by prions composed
of proteinaceous material devoid of nucleic acid. CJD occurs sporadically
(generally 1 case/1,000,000 population per year) in older patients (average age
of 65) and is characterized by rapidly progressive dementia, accompanied by
severe muscle spasms and incoordination. Death usually occurs within 3 to 12
months (average 7 months). CJD activity in Texas, which has a population of
nearly 19 million, appeared to be typical. The statewide death rate for 1995 and
1996 was just under 1/1,000,000. In April of 1997, the Texas Department of
Health became aware of an increased number of possible CJD cases in a 23-county
area of NE Texas with a population of just over one million. After review of
medical and pathology records, four patients were identified with definite
classic CJD and three were identified with probable CJD. Dates of death for the
eight patients were from April, 1996 through mid-July 1997. The patients were
from 46 through 65 years of age; four were male and three were female. A
case-control study to identify risks for CJD in NE Texas has been initiated. http://www.jifsan.umd.edu/tse/Rawlings.htm

Blood meal used to make cattle feed was recalled because it was cross-
contaminated with prohibited bovine meat and bone meal that had been
manufactured on common equipment and labeling did not bear cautionary BSE
statement.

>>>The CWD herd certification program is a voluntary, cooperative
program that establishes minimum requirements for the interstate movement of
farmed or captive cervids, provisions for participating States to administer
Approved State CWD Herd Certification Programs, and provisions for participating
herds to become certified as having a low risk of being infected with
CWD<<<

Greetings USDA/APHIS et al,

I kindly would like to comment on Docket No. 00-108-10 Chronic Wasting
Disease Herd Certification Program and Interstate Movement of Farmed or Captive
Deer, Elk, and Moose; Program Standards.

I believe, and in my opinion, and this has been proven by scientific facts,
that without a validated and certified test for chronic wasting disease cwd,
that is 100% sensitive, and in use, any voluntary effort will be futile. the
voluntary ban on mad cow feed and SRMs have failed terribly, the bse mad cow
surveillance program has failed terribly, as well as the testing for bse tse
prion in cattle, this too has failed terrible. all this has been proven time and
time again via OIG reports and GOA reports.

I believe that until this happens, 100% cwd testing with validated test,
ALL MOVEMENT OF CERVIDS BETWEEN STATES MUST BE BANNED, AND THE BORDERS CLOSED TO
INTERSTATE MOVEMENT OF CERVIDS. there is simply to much at risk.

In my opinion, and the opinions of many scientists and DNR officials, that
these so called game farms are the cause of the spreading of chronic wasting
disease cwd through much negligence. the game farms in my opinion are not the
only cause, but a big factor. I kindly wish to submit the following to show what
these factors are, and why interstate movement of cervids must be banned.
...

Transmissible Spongiform Encephalopathy TSE Prion Disease have now been
discovered in a wide verity of species across North America. typical C-BSE,
atypical L-type BASE BSE, atypical H-type BSE, atypical H-G BSE, of the bovine,
typical and atypical Scrapie strains, in sheep and goats, with atypical Nor-98
Scrapie spreading coast to coast in about 5 years. Chronic Wasting Disease CWD
in cervid is slowly spreading without any stopping it in Canada and the USA and
now has mutated into many different strains. Transmissible Mink Encephalopathy
TME outbreaks. These Transmissible Spongiform Encephalopathy TSE Prion Disease
have been silently mutating and spreading in different species in North America
for decades.

The USDA, FDA, et al have assured us of a robust Triple BSE TSE prion
Firewall, of which we now know without a doubt, that it was nothing but ink on
paper. Since the 1997 mad cow feed ban in the USA, literally tons and tons of
banned mad cow feed has been put out into commerce, never to return, as late as
December of 2013, serious, serious breaches in the FDA mad cow feed ban have
been documented. The 2004 enhanced BSE surveillance program was so flawed, that
one of the top TSE prion Scientist for the CDC, Dr. Paul Brown stated ; Brown,
who is preparing a scientific paper based on the latest two mad cow cases to
estimate the maximum number of infected cows that occurred in the United States,
said he has "absolutely no confidence in USDA tests before one year ago" because
of the agency's reluctance to retest the Texas cow that initially tested
positive.

The BSE surveillance and testing have also been proven to be flawed, and
the GAO and OIG have both raised serious question as to just how flawed it has
been (see GAO and OIG reports). North America has more documented TSE prion
disease, in different documented species (excluding the Zoo BSE animals in the
EU), then any other place on the Globe. This does not include the very
likelihood that TSE prion disease in the domestic feline and canine have been
exposed to high doses of the TSE prion disease vid pet food. To date, it’s still
legal to include deer from cwd zone into pet food or deer food. Specified Risk
Material i.e. SRM bans still being breach, as recently as just last month.

nvCJD or what they now call vCJD, another case documented in Texas last
month, with very little information being released to the public on about this
case? with still the same line of thought from federal officials, ‘it can’t
happen here’, so another vCJD blamed on travel of a foreign animal disease from
another country, while ignoring all the BSE TSE Prion risk factors we have here
in the USA and Canada, and the time that this victim and others, do spend in the
USA, and exposed to these risk factors, apparently do not count in any way with
regard to risk factor. a flawed process of risk assessment.

sporadic CJD, along with new TSE prion disease in humans, of which the
young are dying, of which long duration of illness from onset of symptoms to
death have been documented, only to have a new name added to the pot of prion
disease i.e. sporadic GSS, sporadic FFI, and or VPSPR. I only ponder how a
familial type disease could be sporadic with no genetic link to any family
member? when the USA is the only documented Country in the world to have
documented two different cases of atypical H-type BSE, with one case being
called atypical H-G BSE with the G meaning Genetic, with new science now showing
that indeed atypical H-type BSE is very possible transmitted to cattle via oral
transmission (Prion2014). sporadic CJD and VPSPR have been rising in Canada,
USA, and the UK, with the same old excuse, better surveillance. You can only use
that excuse for so many years, for so many decades, until one must conclude that
CJD TSE prion cases are rising. a 48% incease in CJD in Canada is not just a
blip or a reason of better surveillance, it is a mathematical rise in numbers.
More and more we are seeing more humans exposed in various circumstance in the
Hospital, Medical, Surgical arenas to the TSE Prion disease, and at the same
time in North America, more and more humans are becoming exposed to the TSE
prion disease via consumption of the TSE prion via deer and elk, cattle, sheep
and goats, and for those that are exposed via or consumption, go on to further
expose many others via the iatrogenic modes of transmission of the TSE prion
disease i.e. friendly fire. I pondered this mode of transmission via the victims
of sporadic FFI, sporadic GSS, could this be a iatrogenic event from someone
sub-clinical with sFFI or sGSS ? what if?

Two decades have passed since Dr. Ironside first confirmed his first ten
nvCJD victims in 1995. Ten years later, 2005, we had Dr. Gambetti and his first
ten i.e. VPSPR in younger victims. now we know that indeed VPSPR is
transmissible. yet all these TSE prion disease and victims in the USA and Canada
are being pawned off as a spontaneous event, yet science has shown, the
spontaneous theory has never been proven in any natural case of TSE prion
disease, and scientist have warned, that they have now linked some sporadic CJD
cases to atypical BSE, to atypical Scrapie, and to CWD, yet we don’t here about
this in the public domain. We must make all human and animal TSE prion disease
reportable in every age group, in ever state and internationally, we must have a
serious re-evaluation and testing of the USA cattle herds, and we must ban
interstate movement of all cervids. Any voluntary effort to do any of this will
fail. Folks, we have let the industry run science far too long with regards to
the TSE prion disease. While the industry and their lobbyist continues to funnel
junk science to our decision policy makers, Rome burns. ...end

*** why do we not want to do TSE transmission studies on chimpanzees $

5. A positive result from a chimpanzee challenged severly would likely
create alarm in some circles even if the result could not be interpreted for
man. I have a view that all these agents could be transmitted provided a large
enough dose by appropriate routes was given and the animals kept long enough.
Until the mechanisms of the species barrier are more clearly understood it might
be best to retain that hypothesis.

Kuru and Creutzfeldt-Jakob disease of humans and scrapie disease of sheep
and goats were transmitted to squirrel monkeys (Saimiri sciureus) that were
exposed to the infectious agents only by their nonforced consumption of known
infectious tissues. The asymptomatic incubation period in the one monkey exposed
to the virus of kuru was 36 months; that in the two monkeys exposed to the virus
of Creutzfeldt-Jakob disease was 23 and 27 months, respectively; and that in the
two monkeys exposed to the virus of scrapie was 25 and 32 months, respectively.
Careful physical examination of the buccal cavities of all of the monkeys failed
to reveal signs or oral lesions. One additional monkey similarly exposed to kuru
has remained asymptomatic during the 39 months that it has been under
observation.

snip...

The successful transmission of kuru, Creutzfeldt-Jakob disease, and scrapie
by natural feeding to squirrel monkeys that we have reported provides further
grounds for concern that scrapie-infected meat may occasionally give rise in
humans to Creutzfeldt-Jakob disease.

Recently the question has again been brought up as to whether scrapie is
transmissible to man. This has followed reports that the disease has been
transmitted to primates. One particularly lurid speculation (Gajdusek 1977)
conjectures that the agents of scrapie, kuru, Creutzfeldt-Jakob disease and
transmissible encephalopathy of mink are varieties of a single "virus". The U.S.
Department of Agriculture concluded that it could "no longer justify or permit
scrapie-blood line and scrapie-exposed sheep and goats to be processed for human
or animal food at slaughter or rendering plants" (ARC 84/77)" The problem is
emphasised by the finding that some strains of scrapie produce lesions identical
to the once which characterise the human dementias"

Whether true or not. the hypothesis that these agents might be
transmissible to man raises two considerations. First, the safety of laboratory
personnel requires prompt attention. Second, action such as the "scorched meat"
policy of USDA makes the solution of the acrapie problem urgent if the sheep
industry is not to suffer grievously.

Transmission of scrapie to the cynomolgus monkey (Macaca fascicularis).

Gibbs CJ Jr, Gajdusek DC.

Nature 236, 73 - 74 (10 March 1972); doi:10.1038/236073a0

Transmission of Scrapie to the Cynomolgus Monkey (Macaca fascicularis)

C. J. GIBBS jun. & D. C. GAJDUSEK

National Institute of Neurological Diseases and Stroke, National Institutes
of Health, Bethesda, Maryland

SCRAPIE has been transmitted to the cynomolgus, or crab-eating, monkey
(Macaca fascicularis) with an incubation period of more than 5 yr from the time
of intracerebral inoculation of scrapie-infected mouse brain. The animal
developed a chronic central nervous system degeneration, with ataxia, tremor and
myoclonus with associated severe scrapie-like pathology of intensive astroglial
hypertrophy and proliferation, neuronal vacuolation and status spongiosus of
grey matter. The strain of scrapie virus used was the eighth passage in Swiss
mice (NIH) of a Compton strain of scrapie obtained as ninth intracerebral
passage of the agent in goat brain, from Dr R. L. Chandler (ARC, Compton,
Berkshire).